United Brachial Plexus Network, Inc.

Pat,I hope you have better luck finding the right medications for your "fibro" than I have! The Topamax hasn't really helped me. I've tried many things! I am still taking Topamax but hope to ween off of it as soon as possible.I have lost about 20+ pounds since I started taking the medicine in October.But I haven't felt "well" 90% of the time.I pretty much have all the regular fibromyalgia symptoms plus the side effects from the Topamax! I hope there hasn't been any permanent damage to my organs due to this drug.I feel like I'm dying.

This is my first posting on any message board so please excuse any *goofs*. I just wanted to share with anyone who needs to hear it. I have found that the biggest help for the pins and needles that we are feeling from Topamax is lots and lots of water. I read it on a different site once and tried it out. Nothing has helped as much as that piece of info. I increased my water intake and the pins and needles have almost disappeared altogether! I also take a muti-vitamin usually marketed for seniors. Like Centrum Silver or something in that arena. It really helps with some of the side effects also. I really hope this helps. Good luck everyone!

Ahlely,
I raed your reply and I gasped at the idea of absence seizure.My son was born with them and grew out of them by 5 1/2,now that he is fourteen it scares me.The dr.s said they may return as a teen. i CHOSE NOT TO MEDICATE when he was young and he grew out of them with no side effects. I am not sure that I will do the same as a teen but after reading these side effects I just might not chose meds again.My prayers are with you.

I'm on 100mg of Topomax and personally I have had no negative side effects. I was on Depakote previously and that made me gain lots of weight and I couldn't concentrate or have a normal conversation without forgetting what I was talking about. It made me feel as if I were going crazy.
Then they put me on Topomax and I lost the weight I had gained, and then it steadied out with no more weight loss. Also when I began I felt the pins and needles but soon they subsided once my body got used to the medicine.
I take it for migraines and it was the best thing that ever happened to me. I got my life back. I've tried so many things in the past and this actually worked.
Sorry to hear how what it's doing to other people but it has worked good for me.
-Traci

I take topamax for fibromyalgia...
This is actually my second time to take it. The first time I tried it. I hated it. I had the normal complaints. Brain fog. Feeling like I was was going crazy. Temper tantrums. Crying fits. But no benefits. And that was just on 50mg a day. I quit taking them after 30 days.
In January my Doctor convinced me to try again, as all the other things we had tried were not working. Let me say that my fibro is so bad that I have spent a year in a wheel chair and the past two years on crutches and I am on disability. My life has been hell. Well, when you are in as much pain as I am daily. You will do anything to get out... Even try topamax more than once and my doctor told me I never really gave it chance and that some people are more sensitive to the side effects than others and it takes a while for their bodies to adjust so we began again this time with 25mg doses and slowly increased them. Every 2 to 3 weeks depending on how I was doing we increased the dose. I am at 150 mg a day now. I want to tell you that I was taking 5 vicadin ( pain pills) a day back in January... now I take none... all I take is the topamax and vioxx (and anti-inflamitory) and a pill (trazadone) to help me sleep. I have been walking without the crutches for over a month. I have also lost 12 pounds. I have stopped taking the steroids I was on in January along with about 8 other medications... Topamax has saved my life... at least for now... My doctor says I should with hold my judgement until after winter. he says that I may build up a tolerance to the drug and that the cold weather could trigger a relapse as it often does.. but I say if topamax gives me just one relatively pain free summer.. I will be gratefull...
-Blessings to you all
-Lori Anne in Kansas

My Mother always said when making an important decision you should always weigh the "pro's & con's".Make two lists and compare them ,then come up with your plan.Well, after feeling sick for so long and finally researching my meds. on the internet, my list for Topamax looks like this;Pro:lost 20+ pounds,became more assertive ,uummm...Okay, Cons:whistling ear,"radio" noise in head, dry mouth, stomach ache,diarrhea,acid reflux,tingling hands & feet,too talkative ,restless sleep and no noticable relief from my fibromyalgia symptoms.I think Mom would say Quit....but how do you do it?Right now I take 150mg in the AM and 150mg @bedtime .

To Lorianne in Kansas,Talk about brain fog I already forgot how you spelled your name by the time I switched over to the reply screen!Thank you for your info.Tomorrow when I see my Dr. I plan to mention what you are taking.I have tried almost every combination of meds.for my fibro (not nearly as severe as yours...you poor thing) but I've never tried this combination.

Hello,
I just started taking the drug and they are gradually taking me off of depakote and increasing my topomax and lamictal. They are treating me for bi-polar disorder. I was wondering. When did your side effects begin? For example, my concentration level is way off? When did you start to lose your weight and how long did it take? I havve gained like 50 pounds from all of the other medication they had put me on prior to the lamictal and topomax. Part of the reason they switched me to topomax is their hoping I will lose some weight and so am I.

It is the Wellbutrin that is causing the side effects. It is very common with the SSRI drugs to cause sexual dysfunctions. Best of luck to you.

This is all too familiar to me. I am in the same situation as I am typing this. Did they ever prove that her mental issues were related to Topamax? What was the treatment regime?

thanks and I hope everything is better for you---it is really scary!